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Recovery

Ahhhh the life of an MSer. 

I freaked my husband out recently. Tears and all. I feel bad about it. Sometimes I feel like I’m loosing it though. Like I literally have no grasp on reality anymore. Of course that’s not why I freaked out. My left foot has been getting worse. I now have to think about picking my foot up when I walk. Curbs and stairs hate me! I haven’t fallen. But every time I walk up or down stairs I picture myself falling and exactly how I would hit the ground and exactly who is around and how embarrassing that would be. But in my attempt to stay healthy and active I am still taking the stairs instead of elevators. This may just be part of my stubborn streak. If something/one tells me I can’t do something then that’s all I want to do. Even if it’s my own body. Even if it’s just stairs. 

I also am very thankful that I am right handed. My left hand no longer has the ability to hold things except in a grasping fist type fashion. Something like a pen or pencil would be out of the question. Coffee mugs by the handle are out of the question. The weakness in my left three fingers is constant now. 

This is why I freaked out. I am aware that MS is a degenerative disease. I thought that because I’m young the lesions that I already had would heal. Or at least not get worse. Now that I’m on Tysabri and my damn immune system can’t get into my brain or spine I thought great, I’ll be ok. I know I’m being naive. Isn’t this how we all want to think though? Now I wonder, is it going to get worse? 

My husbands advice is to get back to being more active. He’s not wrong. I kinda crashed after last month. I really pushed too much. The recovery took significantly longer than I thought that it would. 

Let’s think about that for a second. What was too much for me? I ran 2 book fairs at different schools back to back with a few overlapping days. During this time I also had meetings and events for Board of Ed. Now that’s not any more than a normal person with a job has to do on a regular basis. However it took me a month to recover from it. 

That is what I hate most about this. Take my leg and hand. Give me back the ability to have my crazy full life. I love my crazy full life! 

So back to it. The month is over. Back to running. I miss it. Maybe it will help. You know what they say about bodies in motion. 😉

 
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Posted by on April 12, 2016 in Life with MS

 

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Easter Memory

When I was younger I was part of something very special. It was the mother of all service learning projects. They called it “Service to the suffering”. The Diocese of Trenton, a Roman Catholic thing, ran this event with our CCD groups. When I look back at that time in my life I feel very fortunate to have had such a moving experience.

“Service to the Suffering” was held the Thursday, Friday, and Saturday of the Holy Week before Easter. During these three days we would meet together, all of the kids in CCD from the entire diocese. They would split us up into groups. Dividing us from our core CCD groups so that we would meet new people. 

Our newly formed groups would all gather on buses where we would then be shipped off to different locations. All of the places would be somewhere that could use a little TLC that could be accomplished by teenagers. 

My fondest memories of places:

A community pool. We cleaned out the drained pool, painted picnic benches, and raked the expansive lawn. Now that sounds like hard work right? But what I remember is the massive paint fight that my new best friends and I had. Everyone was covered in red paint!

We went to a psychiatric hospital where some of us cleaned the grounds while others sat inside with the patients and did crafts or played games. I was on the grounds crew. Dealing with other people was never one of my specialties. What I remember most about this day was that a boy in our group that I had a serious crush on made me book marks during his craft time. 🙂 I was a teenage girl. 

In my last year I remember being given the honor/burden of getting to carry the cross all day one of the days. 

Every day they pick one kid who gets to carry the cross for the whole day. It was their way of giving us just a small taste of what Jesus had to go through and symbolism for everyone bearing their own crosses through life. 

This cross was no joke. It was a 6 foot tall thick pieces of wood, honest to god you could nail someone to it cross. We don’t play around at Service. 

At the end, on Saturday night there was a big dance. Always a highlight in my book. Of course there was a mass at the end of every day, which was always amazing. When you put hundreds of kids together that really believe and feel it, it can be very powerful. 

Even though my faith is nowhere near what it used to be that is a feeling that I will always hold dear. 

Having this experience was something so powerful and wonderful. Now that I am a mother of “almost teens”, I find myself longing for this kind of experience for my kids. I wish that I could find something for them that would give them the memories and profound emotions that this event held for me.

 Happy Easter

 
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Posted by on March 27, 2016 in the little things

 

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Quick and Dirty

MS Sucks when….

You are so tired that your hand won’t stop shaking and you can’t lift the coffee cup to your mouth. 😦

 
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Posted by on March 25, 2016 in Life with MS

 

Sight

20/25 20/30
Can you believe it?!?!
I get excited that I can tell there are letters. Honestly, I get excited that I can see more than just a large white square! But 20/30? That’s nuts! It’s a miracle!

Yeah, so today was my follow up visit with the eye doc. I haven’t been wearing my contact as often as I should. So I walked into this appointment not expecting much. I certainly wasn’t expecting my vision to be even better than last time. Only by 2 lines, but wow! 

The Doc said that it probably won’t get better than it is now because of the nature of the scar. To which I said, um, I went from 20/260 to 20/30. That’s a miracle. I’m good! 

Of course there are slight set backs. There is so much more visual stimulation when I have my contact in that it really wreaks havoc with my brain. I’d say it cuts my spoon supply in half. 

*If you don’t know what that means read this; Spoon Theory.”

It is still totally worth it for me to wear it though. With it in I have normal vision. I am still getting used to using my right eye. It feels very unnatural. When something comes into my field of vision on the right side it still freaks me out. Depth perception is no longer my friend. I was so used to only using my left eye, I had adjusted. But now that I’m using my right eye I can’t judge distance. Then I take my contact out and my brain keeps using my right eye and I feel like I’m blind. So mental adjustments need to be made. It takes a little while either way right now. I’m afraid that with more frequent use I’ll really have problems when I don’t have the contact in. 

But just like Tysabri this is my momentary band-aid and I’m loving it! 

Normal vision. Ha! I love it! 

 

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Tysabri or Bust

  
I am attempting to live in my own little world right now. I am craving that hut in the woods.

Some how I managed to set the bar too high. Not somehow. I do what I want, and how I want to do it. That is what set the bar too high. I am blessed to be able to do this. I love everything that I do and I want to do it great. Normally I feel like such a slacker. There are so many more things that I want to be doing, so many more things that I want to be learning! Right now however, I just want everyone to expect nothing from me. Right now I am capable of nothing. 

My infusion had to get pushed back a week. Which I know explains everything. Thank goodness I am here now. A friend of mine posts at every infusion how unhappy she is at infusion time. I don’t understand this. I look forward to my infusion like a life raft. I am terrified of the day that they take me off of Tysabri. 

This thought is what filled my mind on the way here today. Sometimes I wonder if it would make a difference. Do I only notice things that are wrong with me because I’ve already been diagnosed? My whole life I have been the “suck it up and deal” kind of person. I am still that kind of mom. “Is it broken? Are you bleeding? No, than stop complaining.” So why is it that now I am so sensitive with myself? I can still walk, talk, breath, eat, see. I can do everything! Is that because of the Tysabri? Probably. Let’s not think about it, right? 

If I am honest I know that the dizziness and the fatigue are not normal. But is it something that would send me to the doctors if I wasn’t diagnosed? No. Not ever. I’m surprised it did 6 years ago. Of course back then the crap with my eyes and the fact that my face went numb would have sent me. When I think about what I am going through now though, there would be no doctors. 

I feel very, very fortunate with my life. That said, I crave some serious alone time. No responsibilities. No, don’t worry about it Janet will take care of it. For a little while I’d like to be in my hut in the woods. 

Don’t worry world I’ll be right as rain tomorrow. Tysabri is coursing through my veins as I type.

 
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Posted by on March 15, 2016 in Life with MS

 

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C25K week 2

I just finished week two day one!

On infusion day!

I’m not going to lie though. I did almost cry half way through. And on the last stretch of running I could no longer flex my left foot. So yeah for thigh muscles.

Week two is a five minute warm up walk, followed by alternating 90 seconds of running and two minutes of walking for twenty minutes, ending with a five minute walking cool down.

I made it the whole way. Yes I’m a day behind and that means that I am going to have to run again tomorrow. The day after my infusion. The worst day of the month for me. But yet again I am arming myself with help. My mother runs with me on Wednesdays. I’ve got this.

Starting this new endeavor has already shown me that I can do more than I ever thought that I could. Sure I’m still at the beginning. But I haven’t given up. I’m still pressing through despite the MS. My future is feeling very positive right now.

 
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Posted by on January 12, 2016 in Life with MS

 

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Can I be a runner?

  

“It’s not a field of dreams.”
Author unknown.

I have recently had the crazy idea that I could become a runner. HaHaHa! 

Ok stop laughing.

Was that just me?

Or was that my MS?

Oh it was my MS! I downloaded the C25K app like 2 months ago. Of course I didn’t start doing it until this Monday. 

Monday was very rough and discouraging. It started out ok. The first week is a 5 minute warm up walk then 20 minutes of alternating between 60 seconds of running and 90 seconds of walking. Then a 5 minute walk/cool down. Well 10 minutes into the run/walk my left foot started dragging on the floor. Not good grasshopper! So I started adjusting how I was running. I picked my legs up high enough that there was no scraping, I don’t want to fall after all. Then using my knee, I threw my leg forward and tried not to fret about the fact that I was now running flat footed. Shin splints here I come. After 5 more minutes of this I decided that it was time to keep it to a walk. I ended my first day 10 minutes early. So I didn’t even mark it as done on the app.

I’m now thinking a 5k is never going to happen. 😦 How am I going to make it 3+ miles if I can’t even make it 20 minutes of walk/running? 😦

However, I am not one to give up. I figured that if I run with someone who will push me, mentally, not physically, then I might be able to do this. I just need to train different muscles. Fine. I’m just starting anyway. I’ve got this!

So, Wednesday I did day one again, but with my mom. She’s much more athletic than I am and such a huge moral support for me. Love her! 

Now I’m not thinking about the 5k that I want to run in March. I’m just thinking that I want to finish day one! While running I kept thinking about that young high school girl with MS. The track star that ran despite the fact that half way through she couldn’t feel her legs anymore and at the finish line had to fall into her coaches arms. I’m using her as my inspiration. 

Find her story here.

That plus my mom got me through it. I did much better. Knowing from the get go that my MS was going to be a problem helped too. On Monday it was a sad surprise. Wednesday I was armed with how to deal with it. So I managed to have no scrapping feet and I made it the full 30 minutes. Yeah!

Today was the real test. The real “Can I do this?”. I was running on my own. Completing day two of my own volition. No one egging me on. No one holding me accountable. Can I do this? Well the answer to that question is Yes! Yes I can! Granted I have only completed 2 days of this and I have a long way to go. Now I am feeling like it’s possible though. The running through knee high wet sand feeling is going away. I have learned how to not drag my feet. Hell, if I can keep working on these muscles maybe I’ll find a way to get back to heel to toe running again. I’m feeling empowered.

My new thought is that people who run outside must be some of the happiest people in the world. I enjoyed running through the park today. I’m always happier when I’m outside. It’s so easy to forget about the rest of the world. And today running went much better. I am actually looking forward to tomorrow’s run. 🙂

 
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Posted by on January 8, 2016 in Life with MS

 

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